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Tuesday, 27 August 2013

Here's an example of access for sick and disabled people in the UK today. Now, Carolyn from Northern seems like a kind and thoughtful respondent. There is clearly regret in the response. But the truth remains that just one person in a wheelchair of certain dimensions can travel at any one time on a Northern Train. Unless a scooter can be folded and carried onto a train, and presumable, the disabled person can transfer to a normal train seat, travel is not permitted at all.

I didn't think about this stuff much until recently, when I started to need a wheelchair here and there myself. It's been a complete eye-opener for me - I thought it might be for you too. Everything in the post-paralympic garden is not as rosy as one might imagine.

I don't imagine anyone has unkindly restricted the access of sick and disabled people on a company's-worth of trains. But the truth remains, it just hasn't been a high enough priority for train companies to comply with their obligations under the Disability Discrimination Act. Or to meet the commitments ratified by the UK under the UNCRPD (United Nations Convention on the Rights of Persons with Disabilities) to include sick and disabled people as fully as possible in society. But not just train companies. Stations must be made accessible too. "Mind the Gap" must become a thing of the past. No-one is arguing it's not a huge task.

But it's a worthwhile one if we want to cling on to any vestige of being the best that we can be, all together.

There is a desire in this response to do better. Now, in 2013 it's time to DO better.

Further to our telephone conversation this morning, I am writing to confirm Northern’s policy on mobility scooters, and more broadly the support and guidance we provide for our disabled customers.

Mobility Scooters

Firstly, I must stress that Northern is committed to improving access to our network and we support and comply with our obligations under the Equality Act.

We do carry wheelchairs up to 67cm wide and 120cm long as explained in the National Rail publication, ‘Rail Travel for Disabled Passengers’. However, due to restricted maneuverability and stability we currently do not accept any type of scooter for travel on our services, regardless of size, unless it can be folded and carried on board as a piece of luggage. Our staff will be available to assist with this.

We cannot carry unfolded mobility scooters because:

·We operate several different types of trains, which call at over 500 stations all with varying platform heights so we cannot guarantee any ramp gradient. This can cause safety issues when driving a mobility scooter on or off a train·The variety of scooter designs also means some have the risk of tipping backwards on ramps; are heavier than the ramp’s safe working load or are the wrong shape to manoeuvre safely inside the carriage

All our trains have room for at least one wheelchair and our trains were designed to allow easy access for wheelchair users to this space. Unfortunately, as there is no standard design for scooters (unlike wheelchairs) we cannot guarantee that a scooter user will be able to manoeuvre their vehicle into the wheelchair space. I hope you can appreciate that we cannot allow passengers to travel, sitting on their scooter in a doorway or vestibule. This could block an evacuation in an emergency and pose an unacceptable risk to both the scooter user and other passengers.

We do understand that more and more people are choosing scooters rather than wheelchairs to aid with mobility. That is why we are undertaking localised trials where variations on scooter design, platform height and type of train can be reduced or isolated to test safety implications – if successful these could operate on a permit system. We are also working with our industry partners to find realistic solutions for our customers who wish to use mobility scooters, unfortunately in the short term it is unlikely that the types of trains we use will change significantly.

Further guidance

Our website contains information about accessibility for customers, including details of Passenger Assist where we can arrange for help and assistance or provide alternative means of travel if a station is inaccessible – it is a freephone number 08081 56 16 06.

Wednesday, 21 August 2013

There's been much talk about what Ed Miliband should and shouldn't do lately.

We have heard a cocophony of voices telling him to stand with the left and telling him to stick to the centre, those telling him to be true to himself and those telling him to be whatever the media need him to be.

It really doesn't matter much what Ed is. What matters is the party he's leading.

That party has to speak for the majority. It has to be bold and innovative. It has to be compassionate and fair. It has to see the world as it really is. It has to listen, not tell.

The Labour Party exists to speak for the worker. In the mists of time and rhetoric, we used to call that "The working class". That term is hollow and empty for many in our society today. They do not identify as working class.

But they are nearly all workers.

Sandra has been working for the same pharmaceutical company for 12 years. They are a very well known, affluent company. They make billions in profit. She is paid relatively well for the factory-line night shifts she does. But the company "don't take on new staff" which for over a decade has been an excuse to keep people like Sandra on temp contracts. She has no guarantee of work from week to week and few employment rights.

Nonetheless, temping for this particular company is seen as one of the best untrained jobs in the town. These are the 21st century workers.

Liam's 24 and works in a call centre. He earns 13k a year and lives with his parents. He has a 2 minute limit on toilet breaks. He has to raise his hand to leave his desk. He gets half an hour for lunch, yet he regularly works from 8 til 7 to meet his targets. He can't afford to rent a place of his own . He is a 21st century worker.

Sandy is a cleaner on a zero hours contract with a major supermarket. She has three young children and their Dad died last year. She doesn't earn enough to pay her bills and fell into debt. The debt is spiralling and she has resorted to pay day loans to get through each month.

Mary is a nurse. She does the job of two nurses, every day on short staffed wards. Her trust is in chaos as it tries to find the "efficiency savings" ordered by George Osborne. She hasn't had a pay rise for years and her salary is frozen at a 1% rise. Her husband is a teacher and faces similar chaos dealt by government hands over the decades. His salary is frozen too, but they lost their child benefit and their tax credits. They live in London. Neither of them can understand why they earn 70k between them, but they can't afford to buy shoes for the kids or take a holiday.

These are the 21st century workers.

Jim is a carer. He worked all his life as a bus driver and his wife was a cook, but she has secondary progressive MS and cannot feed herself or walk any more. He has had to stop work to care for her and of course, she is no longer working. They were astonished to be turned down for disability benefits after 73 years of work between them. Like so many, after months of fear and poverty, they won on appeal. Jim works a 90 hour week. It is backbreaking work. He must bathe his wife, clean her, feed her, lift her in and out of bed. He's 58.

Jim doesn't get paid at all. But he is definitely a 21st century worker.

Steve was a policeman. He lost his job.

If the Labour Party can define these people as the people they must support, it's simplicity itself to know what our policies should be. It is almost comical that a "Labour" party might see these erosions of workers rights and not be sure how to defend them!

But the public need to know who they are defending. They need to know that a Labour party sees their struggles and states emphatically that they are no longer acceptable. They need to identify with the people speaking at them and believe that they are the workers they mean. They need reasons to go out and put a cross in a box and the belief that that cross won't be another total waste of time.

Perhaps it is easier to convince public sector workers that Labour has traditionally been on their side. But Labour today needs to also convince the factory workers and the cleaners and the call centre hamsters and the shop workers and the shelf stackers and the electricians and plumbers and designers that they see their exploitation and will no longer tolerate it.

And the key to it all is for all strands of our politics to embrace this simple reality. It is not "leftie" to defend decent, paid work. It isn't radical to suggest fair pay for a fair day's work. I'm fairly convinced we won these battles decades ago.

It is as Blairite as you like to encourage excellence and reward and success. To believe that everyone deserves the best, however that is delivered. We introduced the minimum wage after decades of battles in a Blairite government! And yes, however the press care to report it now, we reduced sickness benefits, lone parent benefits and out of work benefits consistently for the whole time we were in power. Not by cutting and hurting but by helping people to get on. With Sure Start centres and free childcare and Access to Work. With the Disability Discrimination Act and civil partnerships and devolution. Yet we've become terrified to say it!

We can run a good economy by using all of our talents, not by watching society "get by" on a daily grudge of making ends meet and austerity, believing that's all there is. All there'll ever be. We can build and produce and train and grow our economy on virtue, not the next over-inflated bubble.

A Labour party know all this. Every member, every MP. We know it works and we showed it works

By living under the shadows of 80s past, of militant and strikes, we have become terrified of identifying with anyone at all. It's ludicrous. We speak for the worker. ALL of the workers. And most people in this country work. The greatest victory of the right wing press has been making left wing governments terrified of talking about workers. A Labour party ashamed to defend labour. Last year, George Osborne announced a scheme to buy people's employment rights for goodness sake and there was barely a flutter of response. This is what we've come to by being ashamed to be who we are.

Very few feel as valued as they should. Very few feel they get to reach their full potential or live a comfortable life. We should identify with all of them. And they should naturally identify with us again.

Labour must engage all of these people and fast. But even faster, they have to give the people something to identify with. To identify themselves with. They are the 21st century workers, but in this 21st century consumer trance and political hiatus, few even realise it any more.

Monday, 19 August 2013

That moment you cry with relief because finally... finally after two years, you've successfully negotiated the maze of an 18 month claim for disability living allowance, rejection, appeal, near-tribunal, work capability assessment, Support Group, social services in a system that no longer recognises moderate needs, 8 assessments for care, Dave on crisis leave from work to look after us for 5 months.

At last! It's all done!

After endless months of explaining to endless strangers how you are disabled, time and time again, telling those strangers things you don't tell your husband.

Then the moment you cry because you realise you qualified for them all. You needed them all.
That'swhen you don't have much choice but to explain it to yourself.

Monday, 5 August 2013

This is your very last chance to give your opinion on abolishing DLA and replacing it with PIP, particularly the 20m rule. We Are Spartacus have done our own response (see below) and hope it helps. The consultation ends at midnight tonight

The following step-by-step instructions are designed to make it as straightforward as possible to respond; the instructions you use will depend on whether you’re a disabled person or you’re someone who’s supporting us (eg a health professional).

Note: We’re asking people to copy their responses to our dedicated email address so we can gain an understanding of how people are responding. We will not publish any information that could identify you personally; we’re interested in what you say, not who you are!

Sunday, 4 August 2013

For what it's worth, despite being a woman, writing about politics online, challenging authority and those who believe sick and disabled people should have no rights, I don't really get trolled much.

Why is that I wonder? There's certainly plenty of disability hate out there at the moment - more than at any time I can remember in my lifetime. I've never had death threats, rape threats, sustained cruel trolling or any other nastiness. The very few users I felt it was impossible and pointless to engage with, have been quietly blocked. I don't need to see their hate, they don't want to see my opinions - it's a win-win and really easy to do. One click. "Block" Ooops, done! Just like that.

But then, I've never called anyone a "spaz" or a "mong" online. I hesitate even to call IDS evil.

Anyway, getting into the why's and wherefores of cruel trolling is not the point of this post. My dear friend, Mrs Nicky Clark has suffered some of the vilest abuses I've ever encountered anywhere, never mind online, simply for trying to oppose disability hate language and crime.

No, this post is for those thousands of sick and disabled people who rely on Twitter as their only form of social interaction. Nothing has horrified me more than how totally isolated some of my supporters are. Simply because of their impairments, friends may have drifted away, colleagues no longer call, family may judge and choose to turn away.

For many, Twitter and of course other forms of social media are their only lifeline. Many have found love, acceptance, humour, intelligence and a deep understanding they had despaired of every finding again. It is where the word #spoonie came from.

What's more, many of those people, despite their own isolation, have been engaged in a desperate fight for dignity, support and inclusion which they see being stripped away from them at every turn. They have found a voice and that voice is now powerful, respected and innovative. The idea that self censorship, clearing the floor for their opponents could change anything at all would be anathema to them.

Every civil rights movement through time has found success by speaking out and speaking out and speaking out, calmly, reasonably, but forcefully whatever their critics say, whatever the provocation, however they are threatened or decried. Nothing else ever changed the world, ever.

So I'm afraid there will be no silence from me. I will be here, supporting people desperate for that support, as I am most days. I will be here for the friend who hasn't seen another human being since the grocery shopping was delivered last Tuesday. For the friend who just found out they are to lose everything at the hands of the DWP, with no idea at all why or how it could have happened. I will be here, as I always am when I open my DMs to find someone so desperate, they plan to take their own life - oh those messages I get regularly. They break my heart, silence would be a cruel and incomprehensible response.

Twitter silence will do nothing to articulate fear or desperation or loneliness. As a response to bullying and cruelty, I'm afraid I don't see the reasoning.

Lynton Crosby, please, tell me, how on earth did that decision come about? I mean, the residents of my own town in West Sussex wouldn't even agree to build a nice park on the seafront for children, because they were convinced it would lead to - I'm not making this up - "Anti-social behaviour"

Thursday, 1 August 2013

I believe they're vital in our fight. It's only by seeing HOW we achieve what we do that we can explain why there are barriers and obstacles others don't face. It's only by saying what we go through that others may understand how very, very far we need to travel in support, services and "work provision" for those with fluctuating conditions.

Nonetheless, it either elicits cries of "Oh poor you, you're so brave" or well meaning hints at "inspiration"

There are millions like me, carrying on, day to day, through extraordinary situations. Some work, some can't, some give up, some fight on. It isn't brave, it's life as we know it.

However, there will always be those that question our ability to type, or speak, or attend. To fight and oppose and organise. Just like your lives, some of us sink and some of us swim. Could you really judge either?

I vowed there was plenty I could still do and set about doing it. The medical opinion was that my petulant bowels had suffered so much surgery, they had simply given up. They had succumbed to a nice long sleep and just wouldn't work any more. It was agonising - when you put food or drink into a receptacle that refuses to process it, you writhe and vomit and spend hours on the toilet in a fairly miserable facsimile of life.

They told me to go to bed, take lots of opiates for the pain, be fed through a tube and possibly consider a bowel transplant.

I surmised that those were the very worst things you could do for a sleepy bowel. Opiates make them sleepier, exercise, however gentle stimulates spasmodic responses and eating - however painful and problematic - keeps things moving too.

So, I realised at that moment, that to do the best for myself, I just had to accept the pain and vomiting and diarrhoea and introduce the "Stuff you Drs" plan.

I've slowly built up the distance my weak and wasted legs will carry me. I've eaten "little and often" however much it hurt. I've kicked the opiates into touch bar all but the most delirious days. (A 66% reduction so far)

And I'm proud to announce, it really has worked. Oh, I still feel absolutely dreadful. The pain is searing, it seeps into everything I do. It takes my breath away, leaves me unable to talk. But the vomiting has eased a lot. I'm still sick, but much less often.

And......drumroll please...... I've put on 9 POUNDS!!!!! I am half way to my target and well out of the "feeding you through a tube" hell of permanent and more significant disability (in the true social model sense that the tube, not the feed would disable me so much further both in barriers and the eyes of the general public)

So what can I say? It was extraordinarily tough. So tough, I wonder how I've managed it. I DON'T say this for pity, simply that it's true.

But here's a wonderful thing!!! the Drs I thought I would have to fight have embraced this totally and supported me 100% in my attempts to find less medical ways of dealing with my symptoms.

This is seriously impressive. My new hospital has earned the acclaim of being named because this is truly awesome and I have no hesitation at this point in revealing that the wonderful Drs are at UCH in London.

They have found that I have severe "bacterial overgrowth" from all the operations with a simple test and have started me on an intensive regime of antibiotics to kill all the infections and then.... Pro-Biotics (industrial strength) forever!!!! How cool is that!!

But, they've also discovered that my Vit D is low and this could cause a lot of the fatigue and muscle wastage in Crohn's!! So I'm getting industrial doses of Vit D too. They've recommended a particularly good peppermint tea (no, really!) and have written to my GP to ask that she consider hypnosis for the pain!!!

How astonishingly wonderful is this? To be honest, it's all I've ever wanted from Drs - support to manage my condition in the most natural, effective way for me. I'm not anti-medicine, I just don't want more than I absolutely need.

So how am I???? Hahahaha, that's a tricky one. I'm atrociously better, agonisingly stronger and miserably happier. The pain is awful, the "getting stronger" is like running my own personal marathon every day. There are things that could make this temporarily "better" but I must shun them.

It's horrific.

But am I living a better life? A million times yes. I engage with life again. I spend time with my children and husband. I walk, agonisingly slowly through the shimmering summer days. I cook again and nourish my family in the way that fulfils me most. I laugh and I cry and I feel. The good and the bad.

I'm sure there is some tummy-griping herb that could replicate my symptoms for IDS or Hoban. Perfectly harmless, but equally grinding. If they were to pledge to join me and experience the days as I do, I GUARANTEE they would get serious about sickness, disability, welfare and working in about, hmmm, 7 hours. If Mr Hunt would like to play too, I bet the NHS would suddenly be a very different beast to him.

Do you read this and expect everyone could or should do as I did, make the choice I did? Try it with me and tell me if you could.

As I said, some sink and some swim. In illness as in life. Tomorrow I may sink too. Today I'm swimming for all I'm worth.

Victory!!! OK, it took 18 months and a lot of energy from Child Poverty Action Group, not to mention blogs and emails from all of us, but the BBC have ruled that :

"The Future State of Welfare with John Humphrys, broadcast in October 2011 breached rules on impartiality and accuracy" just as we argued at the time.

"The BBC Trust decided that the subject matter of The Future State of Welfare met its criteria for being a ‘controversial subject’ and a ‘major matter’. The programme postulated that there is an ‘age of entitlement’. The Trust’s Editorial Standards Committee upheld the complaints in relation to accuracy and impartiality.

The Trust found that the programme left viewers with the inaccurate view that the benefits the government is targeting are responsible for increases in benefit spending, when in reality JSA is only 3% of the total benefit bill whereas pension spending is 46% of total benefit spend. The Trust also found that viewers were misled by the failure to provide the necessary labour market information - how many people are looking for work, not just how many jobs are available - that would allow audiences to come to balanced judgments about the reasons why claimants had not entered work."To jog your memories, here's the blog I wrote on it : http://diaryofabenefitscrounger.blogspot.co.uk/2011/10/watch-out-theres-humphrey-about.html

When the programme aired, so appallingly biased was it, we all live tweeted the anti-view with great success, using the hashtag #TFSOWWJH - you can still go back and see the outrage the programme caused.

Strangely though, the programme had been heavily trailed in the Daily Mail beforehand. That's how we knew how bad it would be, that's how we were able to rally our troops in time for the programme.
So, we are vindicated in the BBC judgement, but I imagine many of you are less than impressed with the pyrrhic victory. I imagine you might be thinking "But it's 18 months later!! People will have almost certainly forgotten the programme anyway. The damage was done at the time, no-one will see the apology now"

Well, even more strangely, The Daily Mail, so disgusted with the BBC verdict, have made it front page news today!!!! Now, I know it's recess, I know it's silly season, but really? An entire front page given over to an apology no-one would have seen? They're really that furious that we exposed the truth in just one, tiny drop in the ocean of welfare nonsense? Not only the entire front page, but a double page spread inside the paper!!! (Sorry, I never link to the Daily Mail, I won't give them the oxygen, but you can check easily if you wish)

Don't you think this is strange? The headline screams "BBC ATTACKS HUMPHREYS FOR TELLING THE TRUTH ON WELFARE" Clearly, from the CPAG announcement, we can see he didn't tell the truth. You've all followed this blog long enough to know that apologies from the BBC over this kind of editorial bias are as rare as hen's teeth. You don't get an apology unless the programme is literally dripping in falsehoods and distortions.

So why are the Daily Mail so upset over a hidden-away little apology? Wrung painfully from the beeb by a charity? Why did they get to trail the programme in the first place? Why is it so desperately important to them that welfare "reforms" not only go ahead, but go ahead based on false statistics & distorted evidence?

I don't know the answers, really I don't, but I do know that, bizarrely, the Daily Mail have chosen to make a huge deal about this. By splashing it all over their front page, they made it the most pressing news, in their opinion, in the UK today!!But crucially, we can fight back. We can make sure this article is the most read and shared online today. If we all RT it, share it on Facebook and Google and keep it going throughout the day, we can make sure more people see this article online than see the Daily Mail front page. We can make people question their motives. We can steal the one thing they rely on - hearts and minds - and show them up for the DWP mouthpieces they are.Please join me. I might not know exactly why the Mail have done this, but my radar is spinning. They will have a reason. Let's fight back.Please RT and share. UPDATE : IT DIDN'T TAKE AN EAGLE EYED SPARTACUS LONG TO SPOT THIS : http://www.telegraph.co.uk/culture/tvandradio/bbc/10211915/John-Humphrys-a-victim-of-BBC-Left-wing-bias.htmlYEP, YOU GUESSED IT, IDS IS BEHIND THIS. He's weighed in, and as ever, his Mail lapdogs have clearly simply bent over and given him the floor. Even more reason to RT, Share and spread the word. IS IDS ACTUALLY THE EDITOR OF THE MAIL? YOU MIGHT THINK SO

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About Me

I have a rare form of Crohn's Disease. I was diagnosed 21 years ago and have had many operations to remove strictures (narrowings in my bowel that grow like tumours) I suffer daily pain, often vomiting, malnourished and weak. I take mega-strong medications every day including chemo-style immuno-suppressants, opiates and anti-sickness injections. Sometimes I am fed into my central vein by tube, other times I can enjoy a nice meal out. I have children that I often can't look after and a husband who often looks after me.
Our lives are disrupted daily by the misery of a chronic condition.